Nov. 2014 This week I got an unexpected health diagnosis. It kind of knocked my socks off. It also took away my ability to make beads anymore. So I am changing my blog. I am sure I will write about beads sometimes. I have a whole studio to part with, but I have health issues that are much more important and I want to share my thoughts and challenges on this blog. I hope you will come along with me and share your words of wisdom or encouragement.

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Saturday, November 21, 2015

REALITY

A year has already gone by. It was last November when I was diagnosed with Pulmonary Fibrosis. I think I spent the first three months in shock, maybe longer, maybe I still am, in shock, that is. I come from a family where all the woman, on both sides live well into their 90's. I'm not going to be one of those woman, unless I had a lung transplanet, and I am too old to be considered. It's weird knowing your demise is sooner instead of later. When I first was diagnosed I thought I could write about all of my feelings about this disease on my blog, but I have discovered that I can't do that. Just tonight when I started to write this post I realized that talking about death, especially mine, is just too hard. I just can't put myself out there. I wish I could because I think it would help me accept my disease. I wonder if others with terminal diseases feel this way.

I will tell you this.....it's lonely. No one wants to talk about it and mostly people either pretend there is nothing wrong with me or they go way overboard with the kindness. Neither one of these reactions help me one bit. A few of my really close friends treat me just the same as they always did. I am grateful for that. They ask how I'm doing because they really want to know. That feels good. What I want the most is for people to act the same as they always have.
I have to start using oxygen during the day now. I get out of breath if I go to the grocery or the mall. This will bring on more of what I don't want. People who know there is something wrong (because you can't hide oxygen tubing when you are wearing it on your face) and look at me with pity.
I guess it reads like I'm kind of having a pity party right now though.
Honestly, I don't feel sorry for me. I am just sad about leaving the ones I love.

Okay, for saying I couldn't put it out there, I guess I just have...kind of. I promise everything I write from now on won't be a downer. I plan on enjoying the hell out of the rest of my life. Sometimes though, the thoughts go deep. It is what it is.

2 comments:

Wow, you wrote this on 11/21 and I'm just now getting here.You know me well enough to know I have a few things to say so here goes.A friend recently died of a terminal illness and he lived until he just couldn't anymore. He traveled and fell in love. He talked openly about the fact that he knew he was going to die. He had an amazing attitude.I have another friend who was recently diagnosed with inoperable cancer with metastasis and was given 8 months. She does NOT want to talk about it and has been pushing some of us (me) away. That's difficult for me to understand but I respect her enough to let her live and die in her own way.I would encourage you to continue writing down your thoughts whether it's here or in a private journal.I'm here for ya, pal. Anytime you want to vent, piss and moan or reflect.Like I told my friend (the one that doesn't want to talk to me) that I wouldn't be sending sentimental bullshit messages to her and certainly not Bible passages but I'm a good listener. She didn't respond but I know that she knows I'm here. That's all one can do.Peace out, chica.

About Me

I am a retired registered nurse who began making beads in 1999. Before glass owned me I was a quilter and an oil painter. In Nov. of 2014 I learned that I have Idiopathic Pulmonary Fibrosis. I was advised by my pulmonologist to stop making beads immediately. He said that although he could not prove that beadmaking was responsible for my disease, inhaling the fumes and possible debis from glass making would only make things worse. Therre is no cure for IPF and I want to protect my lungs as much as I can. So I have moved on to different forms of art.